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#58329 05-22-2006 12:12 PM
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annabel Offline OP
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My mom is having horrible pain in her neck and jaw. She is on fenytenal an morphine to control it. This last January her surgen went in and removed what they thought was causing all the pain, scar tissue. The area felt good for 2-3 weeks and she is back where she started. Also she has a fisstula dead center on her chin. The surgen tried to close it this last Janaury while she was under, but no good. Everyday there is liquid that drains from her chin, about 1/2 a teaspoon. Doctors don't no where is comes from or how to stop it. Has anyone encountered these situations?/ I have more that are odd..but these are the most pressing.

thank you annabel

#58330 05-23-2006 07:57 AM
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If Medical doctors are not giving you satisfaction try Chiropractic. My nephew, a Chriopractor in North Alabama, makes pain go away miraculously....read about the procedures he uses.....There may be a Chriropractor in your area that uses similar techniques.....
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#58331 05-23-2006 08:59 AM
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If I were in your position, I would be taking my mother for a second opinion. The pain is something she shouldn't have to deal with, nor the fistula. To much "we don't know" going on with her doctors so it's time to find someone that is experienced with her issues. Good luck with it.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#58332 05-23-2006 10:51 PM
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Darrell's full of it. Chiropractors are not even considered real doctors. They don't even go to med school.

Some of the reasons a fistula has formed is the body is naturally venting an infection or is a harbinger of a worse unresolved condition like possible recurrence. Take Minnies advise and get a second opinion from a head & neck surgeon.

Have they given her antibiotics? Have they analyzed the discharge? Have they done labwork such as CBC? Has she had an MRI? Tell us the rest of the "odd" ones.

Is she being treated as a CCC?

It would be helpful, to us, to post an abbreviated history in the signature section of her profile like many of us have.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58333 05-24-2006 07:29 AM
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annabel Offline OP
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Yes they have tested the liquid, no it is not an infection. She has had a recent MRI and all is clear. This january the doctor went in, while removing the scar tissue and closed up the fistuala all the way to the bone. In no way has anyone said or been very concerned about it. They tried antibiotics just in case but that didn't do anything. They seem to feel they may need to open her all the way up again to figure it out. She does not want to do this, having already done it before. more later...annabel

#58334 05-24-2006 10:24 AM
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Annabel,
after my first surgery I had lymph fluid draining from a gland that was not tied/cautrized off well enough and it took another surgery for them to go in and find the leak and seal it off. If she had a glossectomy like I did there is a potential that it is lymph fluid. Have them check that out,
Erik


Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
#58335 05-24-2006 01:31 PM
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Annabel,
I agree with Erik. I don't think they have any choice but to open her up and find the cause. Fistulas are never a good thing. It is never a normal condition to have a fistula in the body and it is symptomatic of something. It doesn't sound like a recurrence however, but it is a pathway for infection and other potential adverse effects. I am sure that the surgery would be far less severe than the original surgery in any case.

Closing it up without finding the source was a waste of time. Of course it's going to come back. It's like trying to stop a volcano. I am not even a doctor!

Do you have confidence in her doctors? She's been suffering for an unusually long time - they need to get on it.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58336 05-25-2006 12:41 PM
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annabel Offline OP
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I do have confidence...they have done a very good job. I feel they are trying to use the least invasive approach because she is so shattered over this. Opening her back up has been talked about and it is heading that way. Hopefully the surgury will not be as horrendous as the last. We see her plastics doctor in 2 weeks I will bring up what you have said Erick, she did have a glossectomy and you are saying sounds right. Thank you.

#58337 05-25-2006 03:54 PM
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Anabel - like Gray has said, and I just want to reiterate, fistulas don't just spontaneously appear without a causative reason. The body needs to get rid of something and creates an opening to do so...this is usually the dead cells and decaying matter from some sort of infectious process and healing. One of your earlier posts caught my attention when you said that they tested the exudates from the fistula and decided it wasn't an infection, and then "they prescribed antibiotics." Bottom line antibiotics are prescribed for infections etc. not because there is no evidence of anything. If they are prophylactically giving antibiotics, this leads me to question if they have a clue what they are doing or have any idea what they might be treating. Antibiotic types are gram positive or gram negative or broad spectrum based on what you are trying to treat. Just putting someone on a broad-spectrum antibiotic without knowing exactly what you are treating does not instill confidence in me.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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